Hi everyone I’ve been on Momelotinib for myelofibrosis for 16 months now and it’s been good for my red blood count around 94-96 when I have a blood test every two months. However since March I’ve been having a few problems. My white blood count has dropped slowly and is quite low now and I’ve have been having some digestive problems particularly a sore oesophagus and a cough. This has definitely improved the last 3 weeks or so as have increased Lansaprazole to twice a day instead of once. Does anyone else have any side effects at similar to this on this particular drug
Hello @Nicki535. I commenced Momelotinib in May 2024 having previously been on Ruxolitinib. Prior to starting Momelotinib I was requiring regular transfusions of red blood cells as my haemoglobin level was dropping. I am pleased to say that since taking Momelotinib I have only required two separate units of blood and one of those was after I broke five ribs so that may well have been a contributory factor. It is difficult to say whether I have experienced side effects similar to what you are describing because the fractured ribs caused lung damage which has left me with a permanent cough and long term infection in my lung. The infection has resulted in me requiring numerous courses of antibiotics both intravenously in hospital and oral antibiotics also. I am taking an oral antibiotic three times a week to prevent the infection worsening. Hope I haven’t confused you with all this information! I realise that no too patients are going to be the same. Like you I have myelofibrosis. I wish you well. Willow x
Thank you for replying. Glad you are getting on well with Momelotinib. Great you haven’t had blood transfusions either. I’m the same not had one for 16 months. Just slightly concerned about my drop in white blood cell which is at 1.8 although I feel okay but my consultant dropped my mg dosage to 150mg from 200mg and now it’s dropped my red count to 82 when usually it’s mid 90’s. I’ll have to see what they can do tomorrow. I don’t want to really switch back to Ruxolitinib as that will mean blood transfusions again. It’s weighing it all up. Strangely the Doctor I saw last time kept asking me if I had an infection which I wasn’t aware of because of my white count being low ( although I would have thought it would be high with an infection) I see if your white count gets dangerously low they give you antibiotics as a starting point. That must have been painful breaking 5 ribs. I can’t imagine the pain from that bless you.
Regards